One of the things that the doctors have been telling me since I was diagnosed, is how important diet, healthy eating, and exercise is. For every extra pound that you have that is 4 extra pounds on your joints. Before I got sick I was pretty active, I played basketball for a local league and I was pretty good. I worked out at the gym, and tried to eat healthy when I could. I wasn't thin, but I wasn't morbidly obese either. When I became sick, due to the incredible pain, and the fact that I couldn't really move caused me to gain weight. I had tried diets such as Jenny Craig, but then I had to stop doing to the food having preservatives, and I gained the weight back and then some. When I finally go diagnosed I was put on steroids because the inflammation was so bad. At one point I was taking 1000 mg of IV steroids every week for several months, and was on 60 mg of oral steroids daily. When the doctors tried to lower the steroid dosages my inflammation would get really bad and they had to increase it again. I have literally gained 100 pounds due to steroids. While on them I had side effects such as hot flashes, weight gain, and cravings of foods (particularly salty foods) which added to the weight gain. I couldn't really do any exercise, so the only way I could move and get any (exercise) was physical therapy on land, or in a heated pool. I loved being in the heated pool it felt so good on my joints. I had try different ways of eating healthier, from a gluten free diet ( which my doctor endorsed, but had no benefit so I had to stop), and meeting with a nutritionist. I had lost some weight here and there but gained it back during flares, and since I was on the steroids, that made it even harder. It was also difficult because there are times when I had such bad sore in my mouth that I could only eat soft foods such as ice cream, pudding, milkshakes, mashed potatoes and other soft foods. I lost some weight while on chemo, and I haven't gained it all back. I am still on steroids but not as high a dose as before (Im on 7.5 mg orally), but my doctor wanted to see if it could be increased a bit to help with inflammation while were waiting for a treatment plan. I desperately want to lose weight and I have made several unsuccessful attempts to do so. Right now I am trying to make better choices with food, particularly when eating out, and I am trying to watch my portions. Many of the other diets such as Atkins or South Beach have induction phases that don't let you eat cheeses, certain fruits, and carbs. I can't do those because while you lose quite a bit in those 2 week induction phase, they not only burn fat, but also you lose muscle. Because I have a degenerative disease which causes muscle inflammation and weakness that is not good for me at all. I am not eliminating carbs completely, but I am cutting back, and choosing healthier carbs, such as fruits vegetables, and whole grains.
Because my immune system is so week I can no longer do physical therapy at a physical therapy gym, and can't use their heated pools. I have to have a PT and sometimes an OT come to my house, and work with me on gentle exercises that I can do to help me keep moving as much as I can and keep my range of motion (ROM). I have been trying to do the exercises daily, because my condition is so poor, and I have been declining they are very difficult to do. I frequently have shortness of breath, joint pain, stiffness, swelling, and muscle weakness after I do them. Im trying as best as I can to do them so that I can try to keep moving as much as I can.
Being a very spiritual person, I try to live my life the way that God wants me to. When it comes to my body, God and the Bible says that it is a temple. With that said I need to nourish it with good things, and try to exercise and move it as much as I can. Its hard for everyone to eat healthy and exercise all the time and keep our body in good shape. It is something thats very important, whether you have an illness or not. But when you have a chronic illness its even more important to keep our bodies as healthy and possible. I know that it is very difficult for me to do that with my illnesses. I just have to take it one day at a time and know that I am doing the best that I can to take care of my body and do good things for it.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
I'm really proud of your efforts to be healthy even with all the restrictions you have. I can't exercise much or in the ways I want to because of bone damage from my treatment, and I gained a lot of weight while on steroids too. Just do the best you can, but give yourself a break. You're going through something WAY harder than pretty much anyone else, so you won't be able to do the same things, but that's okay. You're also WAY tougher than pretty much anyone else!
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